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Everything posted by SoliDeoGloria

  1. Say Sue, What test(s) did they do to test you for porphyria? Was it a 24-hour urine test or a genetic test or something else? Also, I'm wondering if the tests are only indicative if you are presently going through a crisis. Any thoughts?
  2. The urine started darkening as soon as I put it in the sunlight, but I left it there for about 6 hours. It reached the color of steeped black tea with a hint of a reddish tinge. I took some pictures of the darkened urine side by side with another sample that was not exposed to sunlight -- very impressive.
  3. I recently had a very weird experience. One day, out of the blue, I became very ill. I thought it was a POTS flare-up. I remembered that there is a "poor man's" porphyria test, so I tried it out. The urine sample that I put in the sunlight darkened very quickly. I called my doctor and went for a urine test at the hospital. The test is still "pending". Does anyone here have porphyria? Is it hard to get a diagnosis? Is there any other condition that would cause urine to darken in the sunlight?
  4. Toward the end of the video, there was a mention that diet contributes to the stores of NO in the skin. He mentioned green leafy vegetables and beet juice. Does anyone know of other foods that promote NO storage? Wondering if my diet is making things worse. Sunlight has always been a huge trigger for me. I don't have problems with low blood pressure, but I do have problems with narrow pulse pressure and I'm assuming it's from low blood volume. Even a bright winter day, with lots of reflection off of the snow, can make me sick. Just trying to figure this all out -- there are so many factors to consider -- it gets so confusing. Thanks for posting the video, it was entertaining as well as informative!
  5. I'm on propranolol for hyperPOTS symptoms. I'm using the 60mg extended release. I have tried the regular propranolol tabs, and for some reason I cannot tolerate them at all. I think it's because my body is so hyper sensitive to even the smallest changes and the regular tabs don't supply the gentle transitions (as the drug kicks in and then wears off) like the ER capsules do. Although the ER capsules work like a charm, I will admit it took about two or three weeks to adjust in the beginning. The only drawback is that the capsules cannot be broken into smaller doses and 60 mg is the lowest available. So it's like taking 3 of the 20mg tabs spread out throughout the day. I am much less symptomatic in the winter, so I have recently experimented with opening the capsule and dumping out a set amount of the little bits inside. It seems to work. It's so hard to be in the "trial and error" phase. I truly hope you find something that works.
  6. Thanks for the input everyone! I bought some himalayan salt and I really liked the flavor. However, being a part of a large family has its disadvantages . . . my hubby and kids also liked it, so now I have to share it with seven others! I think I will still use some iodized salt (in cooking, etc.). I also checked the multi vitamin which I've been taking and it says it provides 100% DV for iodine, so I guess I shouldn't worry about that.
  7. I've been trying to increase my salt intake like my neuro suggested, but I'm a little confused by all of the different kinds of salt available today -- table salt, pink himalayan salt, gray celtic sea salt, etc. When you folks put salt in your drinks or on your food, which kind do you use? Do you know the mineral content of the different kinds? And what about iodized salt? Is that important?
  8. No, Jacquie, I have not tried the Ultima replenisher . . . I had remembered seeing it mentioned on the "autonomic" handout from my neuro. I'd love to know your opinion if you try it. The NUUN tabs take some getting used to if you are switching from gatorade. They are definitely not as sweet (I sometimes add a little stevia if I'm having a sweet craving) and the flavors are muted.
  9. Jacquie, I think that the other natural electrolyte drink that you were mentioning is "Ultima replenisher" and can be found at the website of that same name. Also, there are three kinds of Nuun tablets: the original (called Active Hydration), U Natural, and All Day Hydration. The original has the highest electrolyte profile so that's the one that I use.
  10. My neuro recommends that I use the NUUN tablets (at least 2 tabs per day). They have very little sugar (sugar alternative?) and they don't have any artificial color. I order them online from Amazon and the NUUN company. I think there are also a few other places, like EMS and REI, that sell them online and in their stores. If you are wanting to try them, get a mixed pack because some of the flavors are better than others -- but it all comes down to personal preference. Be aware, though, some of the flavors, like the lemon tea and the kola, have caffeine.
  11. This happens to me all the time. I've just learned to ignore it. But it sure would be nice to know why it happens.
  12. Yup...all depends on the day and the weather and the number of triggers that are affecting me at the time. It ranges from crawling on my hands and knees to get to the bathroom, to walking (on level ground) for about an hour. Never a dull moment...and I mean that with all sincerety.
  13. My TTT was only 10 min., but it took me 2 long months to recover. Doesn't seem to make sense that something so simple could have such a monumental effect. And even now, 3 months after the TTT, I am not back to where I was before the test.
  14. I'm still recovering from a major flare-up. I've come a long way since August, but I'm still not back to where I was before the flare-up. I started exercising with small hand weights and "bicycling" my legs while laying on the couch. I couldn't do stairs either, so I would challenge myself to just walk around a bit more each day (or couple of days) -- I'm talking just very short walks like to the bathroom, to the kitchen to get a drink, to the window to look out, to the front door, etc. Then I started on the recumbent exercise bike -- with a twist. I couldn't even sit on the bike for very long without feeling awful, so I laid down in front of the bike and peddled it from that position -- you have to pedal backwards, but the resistance settings still work. Eventually, I started mixing the supine pedaling with some sitting up pedaling. Recovering from a flare-up is emotionally and physically hard. It's so tricky to judge that fine line between doing enough to make progress, and avoiding setbacks by not overdoing it. You too have an important role in this whole process. It will make a big difference for your daughter to have some reassurance and cheerleading from a loved one. I'll be praying for you both.
  15. Just might want to be careful. I think onions lower blood pressure (by thinning the blood?).
  16. I have a wonderful hubby and kids. They have had to share some "tough love" with me this past year as my POTS symptoms have gotten worse and my driving skills are sometimes "scary". So I pretty much leave it up to them to let me know when they think I should be driving. I'm just getting over a major flare-up, so after several months of not driving I'm now driving within a 20 minute radius (so that it's easier to rescue me if I get in over my head). It's so hard to rely on others to do the driving -- and knowing the inconvenience that it causes just kills me -- but I know that this world doesn't need any more reckless drivers on the road. And I'd never forgive myself if anything happened . . .
  17. Yes, Yes, Yes! I am a very goal oriented person and this is one of my biggest challenges. Emotionally, it's hard to change gears when it becomes apparent that things will not work out as planned. More importantly, it's downright dangerous sometimes . . . like driving somewhere and not being able to drive back home safely (been there, done that, ain't gonna do that no more -- it's too scary!). On the bright side, POTS is giving me a chance to grow in character . . . having a pity-party is easy, but graciously accepting circumstances takes more strength. Trust me, I'm not standing on a pedestal of perfection. I'm a work in progress. But when I thank God for the things (however insignificant) I was able to accomplish, I have a brighter day. The unpredictability of our lives can be a frustration . . . or an adventure!
  18. I've also been thinking of experimenting with 5HTP. My husband uses it to help him sleep. I took a dose (100MG) and within a half hour it lowered my heart rate from 100 to 76. But it disturbed my sleep for some reason, so I'm thinking of trying a lower dosage.
  19. It took me three months to adjust to the propranolol, but it was worth it. All in all, I am feeling better. I tried both the instant release and the extended release forms and I'll have to say that there is a big difference for me. I do much better on the extended release form because it has a gentler effect over the course of the day and my body is very sensitive to changes. The instant release form feels horrible and I have a lot more side effects when I'm on it. I'm still planning on experimenting with the regular form, though, because I'm hoping to taper down the dosage a bit during the winter months.
  20. Winter is definitely easier for me. I used to be totally symptom free in the winters, but for the past two winters I have experienced more symptoms -- but much more subdued, which is a huge blessing. I have to be careful, though, because any "hot" situation can trigger things; for example, the time I went to a crowded Christmas party and it was about 80 degrees in the room and I was so dizzy I almost didn't make it out of the room; and the time I went skiing and the sun was so bright (sunlight triggers something for me) and I was on my feet way to much and I was sick in bed for many days afterward. Also, I don't thermoregulate well, so I have to be careful to avoid getting too cold. All in all, I'm looking forward to the cooler weather. Hope it works out well for you too, westernmass. P.S. I lived in western mass for six years and I loved it. Lots of snow and exciting weather!
  21. Dakota -- Thanks for the suggestion. I tried taking it at night about two months ago. I had trouble sleeping so I switched back to days. But I think I'll try it at night again, just to make sure. You never know!
  22. I'm taking 60mg ER which is a bit of a blessing and curse. It is definitely helping me to be able to stand for a longer amount of time, and it is also helping my nausea. I'm on the lowest ER dosage, but it still seems to be too much when it peaks (about 6 hours after taking it)and the fatigue is horrible. And it takes so long to kick in that I spend most of the morning very tacky. I'd like to switch to the regular tabs so I can take a lower dosage. I read that article about a month ago. I like the fact that they are doing this kind of research. It's important for us to have information that helps the doctors to fine tune treatments specific to our condiotion and not just lump us in with the general public. I'm tempted to take it to my cardiology appointment in a few weeks, but I'm not sure what his reaction will be. I have two questions: How do the regular propranolol tabs react as compared to the ER version? When you take a really low dosage like 10mg or 20mg do you divide it up over the course of the day or just take it once in the morning?
  23. So glad you started this discussion because pulse pressure has been a concern of mine. When I am laying down or sitting, my pulse pressure is pretty normal (about 40). But when I stand up it drops to about 20. The longer I stand, the lower it gets. I can hydrate myself into the bathroom all day and I see very little change, if any, in pulse pressure. Does anyone have any ideas what might influence pulse pressure?
  24. Thanks for the links, Potluck. The third article is particularly interesting -- validates one of my husband's theories. Can't wait to see his face when I show him the article : ) Lindajoy, ChristyD, Issie, Frugalmama, blue, and lissy, I'm so glad to know that I'm not the only one experiencing this reaction to sunlight. I'm going to be pursuing this with my neurologist and cardiologist, so I'll let you know if anything comes of it. Best wishes all!
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